I’m Looking Forward to Living the Rest of My Life after Autoimmune Encephalitis

by tabitha orth | Jun 9, 2020 | AE Warrior Personal Stories

June-10-2020 | Gary Walters

December 2019

The last two years of my life seem to have disappeared from my memory. Gone. Holidays, weddings, a funeral, birthday parties, Christmas and New Year. Friends and family keep telling me things I’ve done and the way I’ve behaved, some of which are very embarrassing to hear. It’s just not me.

This is the result of the disease Autoimmune Encephalitis (AE), the symptoms of which I was clearly exhibiting without my even realizing. Hallucinations, involuntary movements (which developed to 20-30 movements over four or five minutes), insomnia, loss of inhibition, memory loss and finally seizures, none of which I can remember. Apparently, I had two massive seizures at work (a Secondary School where I teach Physical Education), one of which resulted in the police being called due to my resisting all help. I’m told this was the last of a number of smaller seizures as the disease continued to develop and take hold.

The last seizure resulted in hospitalization for more than two months and being seen by a number of doctors and specialists who put me through a whole host of MRI scans, EEG’s, blood plasma analysis and other tests I don’t recall. I was eventually transferred to another hospital, where a specialist identified AE straight away, where I stayed and was treated for more than three weeks.

Lots of my friends and family traveled to see me, none of which I can remember and feel very guilty about admitting to. I do have a memory of very small flashes of shouting inappropriate comments at some female staff and having to apologize the next day and some very small flashes of walking around on other wards in my underwear looking for my ward. Again, it’s very embarrassing and most of it I can’t fully remember.

I’ve been told of other embarrassing events I performed, which eventually resulted in my being placed in a room by myself and given sedatives to help me “relax.” I was given all sorts of medicines, went through a whole host of tests and discussions with specialists on how to treat and control this very rare disease, and no one knew the right answer. It was a case of controlling the disease from worsening and monitoring my condition very closely.

Eventually, I was transferred back to my local hospital and continued to have a wide range of tests, blood samples were taken every morning to be analyzed and, after three more weeks, I was released to go home with a cannular inserted into a vein in my wrist with 24 tablets to be taken during the morning and 12 at night. I also received IVIG treatment to boost my immune system every morning at the local hospital.

I am now awaiting a decision from my consultant regarding the next steps. He has to speak with specialists in London as he is also unsure about what to do. I’ve been signed off work until after Christmas, which I also find frustrating as I feel back to 100%, but deep down I know that is the right decision.

I hope this article gives other sufferers of this very rare disease assurance there are other people out there experiencing similar symptoms of this confusing and inexplicable disease for which hopefully leads to further research and ultimately a successful pathway to complete recovery.

May 2020

Since I wrote the above piece back in late December 2019, I’m feeling back to 100%. The doctors, specialists, occupational health therapists are all very surprised how quickly I seem to have fully recovered, and it’s all down to the support and treatment I’ve had.

It’s now early May, I’m still taking a large dose of meds including Lamotrigine, Levetiracetam, Prednisone, Adcal etc, which to be honest it’s now a case of a gulp of water and down the hatch. It’s now about 10 tablets in the morning and eight at night — massively down from 24 and 12.

I went back to work in early January on a carefully monitored and phased return, building back to full-time before the dreaded COVID-19 hit. I’m not going to lie, going back to work has been tough. The school I work at has moved on, which has is expected in the 12-18 months I’ve been in and out (mostly out). Different students. Different staff. Different expectations. It’s been hard for me, but harder and more frustrating for the brilliant people I’m lucky enough to work with.

When I got back into work I tried to pick up where I left off. It didn’t work, because my expectations of myself are so high. I wanted to know why, how, what had happened to this, that, and the other. I tried to rush back too quickly, and it didn’t work. I wasn’t listening or asking for help enough.

I thought I could pick up where I left off, but I couldn’t. My brain needed time to click back into action. Those billions of neurons needed time. Time, I thought I didn’t have. Fortunately, my employers have been incredibly understanding. They’ve supported me so much, something for which I am eternally grateful.

This is where I know I’m so lucky. I’ve read so many stories of people that are struck with different forms of encephalitis and other life-changing illnesses where they haven’t recovered enough to be able to return to work, or their employers haven’t been as understanding. At times, I feel guilty reading their stories.

As I write this I now only see my specialist twice a year and my meds are being reduced every 10 days. I’m back into full-time work in my original role and physically fit again, running at least three times a week, with lots of sport and the gym. I seem to have a “small” gap in my memory of about 12-18 months, but it could have been a lot worse.

So, it is very possible to make a completely successful and long-lasting recovery from AE and other forms of the disease. I read so many stories of people who have suffered from this terrible illness and are still suffering, so I wanted to write this to let people know there are success stories and you can — with the correct treatment and support network around you — return to full health and look forward to living the rest of your life.

Become an Advocate by sharing your story. It may result in someone receiving an accurate diagnosis who is suffering right now and is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

Be a part of the solution by supporting IAES with a donation today.

When Your Brain is on Fire

by tabitha orth | Jan 21, 2020 | Hot Topics, Special Series

January-22-2020 | Carolyn Keating, PennNeuroKnow

Imagine you’re a bright twenty-something with a new job and a new relationship. Everything seems to be going your way until you start becoming paranoid and acting erratically. Then come the hallucinations and seizures. You’re admitted to a hospital where you’re (incorrectly) diagnosed with a psychiatric disorder. You swing from violence into a state of immobility and stupor. And perhaps even scarier? You don’t remember any of it. Sound like a nightmare? Well, it actually happened to Susannah Calahan, who details her terrifying story first-hand in her 2012 book Brain on Fire: My Month of Madness.

What caused these frightening symptoms? The answer was a disease that had only been discovered a few years earlier (right here at Penn!): NMDAR encephalitis. There are four main phases of the disorder. In the prodromal phase, many but not all patients experience a flu-like illness for up to 3 weeks. The psychotic phase is accompanied by delusions, auditory and visual hallucinations, depression, paranoia, agitation, and insomnia. At this stage, most patients are taken to the hospital, where around 40% are misdiagnosed as having a psychiatric disorder like schizophrenia. As this phase progresses, seizures are very common (although they can occur at any time throughout the illness), as well as involuntary muscle movements like lip-smacking or grimacing, catatonia (muscular rigidity and mental stupor), impaired attention, and memory loss. The next phase is unresponsiveness, which includes symptoms like the inability to speak, loss of voluntary movement, and sometimes abnormal muscle contractions that cause involuntary writhing movements. The last phase is the hyperkinetic phase and is characterized by instability of involuntary bodily functions such as breathing, blood pressure, heartbeat, and temperature. Many patients who breathe too slowly often need to be placed on a ventilator at this stage. The decline to ventilator support can progress very rapidly after several weeks in the psychotic stage, and ultimately patients can be hospitalized for several months with the disease^1–3.

What does NMDAR encephalitis actually mean? This disease is an autoimmune disorder, meaning the body’s immune system mistakenly attacks its own healthy cells. Normally the body identifies foreign substances by making something called an antibody that recognizes a unique part of the invader, thus targeting it for attack and destruction. In NMDA encephalitis though, the immune system attacks the brain (that’s where to term encephalitis comes from), specifically a type of neurotransmitter receptor called an NMDA receptor (NMDAR). These receptors bind the neurotransmitter glutamate, and play an important role in learning, memory, cognition, and behavior. In fact, the symptoms of NMDAR encephalitis resemble those caused by drugs such as ketamine or PCP that prevent the activation of NMDARs. For instance, at low doses ketamine and PCP cause paranoia, false perceptions, and impaired attention (like the early stages of NMDAR encephalitis), and at higher doses these drugs cause psychosis, agitation, memory and motor disturbances, and eventually unresponsiveness, catatonia, and coma². Several mechanisms have been proposed to explain the symptoms caused by antibodies targeting the NMDAR, but most of the evidence seems to support the idea that the receptors get removed from the cell surface and internalized. For instance, experiments in the laboratory demonstrate that when animal neurons grown in a dish are exposed to patients’ anti-NMDAR antibodies, the number of NMDARs on the cell surface decreases as the amount of antibodies increase. When the antibodies are removed, the number of NMDAR receptors on the cell surface returns to baseline within 4 days¹.

It’s easy to remove antibodies in a dish, but how do doctors get the body to stop producing antibodies against itself? Step one is identifying what triggers antibody production in the first case. Interestingly, NMDAR encephalitis predominantly affects women, and ovarian teratomas (a type of tumor made up of multiple types of tissues, which can include nervous system tissue) are responsible for 50% of cases in young women². In patients who have some sort of tumor, removal improves symptoms in 75% of cases. Interestingly, herpes simplex virus can also cause encephalitis (inflammation of the brain), and about 20% of these patients also develop antibodies against NMDAR². Treatment consists of immunotherapy: corticosteroids, IV infusion of immunoglobulins, and/or plasma exchange¹, however patients with a viral trigger tend to be less responsive to treatment than those with a teratoma trigger or the 50% of patients with an unknown trigger². Once treatments begin improvements in symptoms start within a few weeks, though return to baseline functioning can take up to three years. Rehabilitation is required for many patients after they leave the hospital. Deficits in attention, memory, and executive function may linger for years, but luckily over 75% of patients with the disease recover to at or near baseline neurological functioning¹.

Doctors and scientists hope to develop new treatments involving immunotherapy combined with small molecules that are able to access the brain to directly combat the effects of anti-NMDAR antibodies, ideally leading to faster control of symptoms and shorter recovery time². A brand new animal model of the disease was just described last week that will hopefully lead to more discoveries about how the disease is triggered and potential new therapies⁴. And with increased awareness of autoimmune disorders against the brain, doctors will be able to more quickly correctly diagnose patients with this illness and get them the treatment they need.

References:

Venkatesan, A. & Adatia, K. Anti-NMDA-Receptor Encephalitis: From Bench to Clinic. ACS Chem. Neurosci. 8, 2586–2595 (2017).
Dalmau, J. NMDA receptor encephalitis and other antibody-mediated disorders of the synapse: The 2016 Cotzias Lecture. Neurology 87, 2471–2482 (2016).
Dalmau, J. et al. Anti-NMDA-receptor encephalitis: case series and analysis of the effects of antibodies. Lancet Neurol. 7, 1091–1098 (2008).
Jones, B. E. et al. Anti-NMDA receptor encephalitis in mice induced by active immunization with conformationally-stabilized holoreceptors. bioRxiv 467902 (2018). doi:10.1101/467902

Your generous Donations allow IAES to continue our important work and save lives!

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

Through my eyes: Watching my Dad’s AE journey

by tabitha orth | Nov 13, 2019 | AE Warrior Personal Stories

November-13-2019 | Ryan J Dinero

It’s been a little over two years since I got the phone call from my Mom. I was a sophomore in college and was entirely unprepared for the conversation that was to follow. She explained that my dad had a minor seizure while at work and was being transported via ambulance to the hospital. This news came as a total surprise to me because my dad was in seemingly perfect health – no drinking, no smoking, and he exercised frequently. While I could tell that my mom was obviously shaken, in the moments after that phone call I was able to convince myself that everything was fine, that he would get a prescription and return home the same day unscathed. Like many others who have experienced the grueling battle against autoimmune encephalitis I couldn’t have been more wrong about what was to follow. So began my dad’s battle with the disease.

Its hard to explain to people who haven’t ever heard of AE that it’s not a simple disease to diagnose. In my dad’s case, it took two separate stints in the hospital to finally get an accurate diagnosis. After the first incident he was admitted into the ICU where he lost control of his body almost entirely for several days until the steroid medications began to reduce the swelling in his brain. The neurologists at our local hospital were perplexed as to what the cause of his symptoms could be. They ran a series of tests that ruled out everything from a stroke, a bacterial infection, as well as a multitude of other conditions that I can’t begin to remember. After two weeks in the hospital his facilities began to come back as the medicine did its job, and we stayed hopeful that it was somehow an isolated incident not to be repeated. He was released and began resting at the house as he recovered. It couldn’t have been more than two weeks later that I was woken up by my mom’s screaming in the early hours of the morning. As I ran the stairs I prepared myself for what I was about to see, filled with adrenaline and terror that even two years later keeps me awake in the night. When I reached the living room, I discovered my Dad on the couch having a full-on seizure, something that I had only previously seen in movies. Knowing little to nothing about what strategies to employ to help, I opted to pick up the phone and dial 911, and just as I heard the phone ringing I heard my Dad’s voice from the other room express that the seizure was over and that he felt fine. I hesitantly told the operator that things were fine, spent a few minutes making sure my Dad was responsive and lucid, and somehow returned to sleep. Less than an hour later I was awoken by the same screams, and this time I knew that another hospital visit was imminent. Thankfully, the doctors explained that a small reduction in the seizure medication was to blame and they sent us home that same day.

Over the next month my Dad returned to his normal self slowly but surely. His previous hospital stays were characterized by extremely abnormal behavior that the doctors attributed to his brain swelling. Things that he would have normally never said or done became commonplace while he was in the hospital. He forgot names, places, and other details. After the doctors adjusted his medicine he became more lucid. He was able to laugh at jokes and even bust out some of his own signature humor. While things were obviously different, namely his strength and ability to remain energetic throughout the day, things felt normal. They remained that way until Christmas Day, when another minor seizure sent us to the Houston Medical Center. The hospital was almost completely understaffed and made for a less than ideal celebration of Christmas. This visit was the most serious of the many that we experienced, as we called Houston Methodist our second home for over a month while doctors scrambled to properly diagnose my Dad’s symptoms. The team of neurologists there were incredible given the circumstances and after weeks of uncertainty and guessing, they were able to finally conclude that my Dad was suffering from autoimmune encephalitis caused by an antibody that was unknown.

For my family, a diagnosis was everything we had wanted; we could finally begin a treatment plan that was focused, instead of one that had no timeline or endgame in sight. By this time however, my Dad’s health had seriously taken a toll. As a result of losing his ability to walk he was bedridden for most of the month. It was also around this time in the hospital that something seemed to be off with him mentally, he was saying things that weren’t necessarily true and overall had developed a very bad attitude that led to frequent outbursts.

After another lengthy stint at a physical therapy center, Dad was finally able to return home. My mom worked tirelessly with him every day on his occupational therapy, encouraging him and try and stay positive. Things were okay again for a few months, but eventually took a dark turn as my Dad began having suicidal thoughts and began exhibiting symptoms of psychosis, leading him to believe things about the world that weren’t true. He was constantly worried about money and convinced himself that the police were looking for him and had a warrant for his arrest. He left the physical therapy facility in February and in April he attempted to take his life for the first time. Thankfully he was unsuccessful, but he did serious damage to his arm as a result and had to be admitted to a psychiatric hospital for a few weeks and had to undergo more physical therapy for his arm.

It was during his stint in the psychiatric hospital that I first reached out to the folks at the International Autoimmune Encephalitis Society where I received tons of resources about how to get Dad released from the psychiatric unit. Once he was released, it became apparent that IVIG treatments were the right treatment, but we were denied a total of 3 times by our insurance provider on the grounds that the treatment was not FDA approved and did not actually treat AE. Thanks to the hours of phone conversation with members of the IAES, I was able to eventually overturn the decision and Dad began receiving IVIG treatments shortly after. When we returned home, I could tell that he was tired of living, that his spirit was drained, and he was ready to give up.

Despite utilizing every available resource at our disposal, he succeeded in taking his life in late September of 2018, just three days before his 51^st birthday.

It’s hard to describe my thoughts and feelings throughout the past two years because the only way I can think of it is as a never-ending roller coaster, constantly up and down with no end in sight, until there finally was one.

I would be failing to honor my Dad’s legacy if I failed to mention that he was an incredible man, the best man I think I’ll ever have the pleasure of knowing. That said, for me, the experience was agonizing and easily the worst thing I’ve ever had to endure. It felt like some days would never end, and it was exhausting trying to rationalize with someone’s who’s brain would not let them experience reality the way it ought to. The countless hours spent sleeping on uncomfortable hospital furniture, the excruciating hours spent at physical therapy being a cheerleader, and the anxiety of waiting for the doctor to step in the room are just a few poignant memories that come to mind when I think about that period of my life. Some of the happier memories involve performing daily miracles: like making my Dad laugh at a dumb joke or getting him excited enough about The Beatles to get him to sing along in the car.

This whole experience has shaped me and impacted me in ways that I cannot begin to describe. While my Dad’s battle with AE ended almost a year ago on September 20^th, I continue to wage my own battle every day dealing with the repercussions of this deadly disease. It’s still hard to get out of bed some days because everything is a reminder that I’m here and he isn’t. I can’t help but think about what I could have done different, how I could have made his life a little better than I tried. I think these feelings are natural now that he’s gone. As much as I try to not let myself dwell on them they are always in the back of my mind. The whole-time Dad was sick I was in school three hours away, so many weekends were spent back home at the side of a hospital bed while I struggled through my sophomore and junior years of college. I somehow managed to stay in school and keep my grades up, and I’m looking forward to graduating this coming year.

For the first time in a very long time I can confidently say that I am genuinely happy and hope that by writing a little bit of my story that someone out there, whether it be a caretaker, a friend, a family member, or even someone who hasn’t heard of AE would be encouraged and inspired.

To all the caretakers out there – keep going and don’t let up. Use the resources that IAES has to provide the best care to your loved one. I can confidently say that if it weren’t for this organization my Dad would never have received IVIG treatments, which were instrumental in his recovery.

If you’re reading this, and can relate in any way, I’d love to hear from you about your experience. Much love to everyone.

Ryan

Contact Ryan at ryandinero@icloud.com

Your generous Donations allow IAES to continue our important work and saves lives!

Become an Advocate by sharing your story. It may result in an accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to: IAES@autoimmune-encephalitis.org

IAES Turns 3. Meet Our New Board of Directors

by Melody Wilson | Sep 5, 2019 | Hot Topics

September 5th, 2019

The IAES Board of Directors is a group of committed volunteers. No board member receives compensation. Therefore, we are especially grateful to have the expertise and talents of these dedicated professionals. Our annual election results bring us some familiar faces, who are now in new positions, and some new faces. All of whom are fully dedicated to serving the worldwide autoimmune encephalitis community and advancing our mission.

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Tabitha Andrew Orth, President

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Dr. Daria Muir, Secretary

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Gene Desotell, Vice President

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Oksana Sweeney, C.P.A, Treasurer

Dear AE Family,

Who would have imagined in 2016 that IAES would change the direction of the AE community? Yet that is the praise we are hearing from Doctors, patients, caregivers and families from all over the world.

As the community’s only Family/Patient centered non-profit, IAES offers services that were never available before. IAES provides guidance from when a person first becomes ill all the way through to their recovery/rehabilitation. You find a family you never knew you had with IAES. We take your hand and become your constant BFF resource no matter what challenge you find yourself faced with.

Our free pro-active guide, the ‘First Aid Tool Kit’, has become the ‘go to’ guide in the AE community.

IAES provides information that overturns treatment denials, medical over billing, educational support in understanding treatments, the disease process and what to expect. Guidance to improve relationships with your medical team, resources that affect every avenue of this journey.

Doctors around the world utilize our website to accurately diagnose and treat their patients. A team of doctors in Russia contacted us to thank us for the work we do and reported that the information they were able to access on our website saved their patients’ lives.

Our collaboration with top researchers in Autoimmune Encephalitis continues to widen. The increase in awareness in the medical community has resulted in a much higher rate of patients getting diagnosed faster. The daily gratitude we receive for our services just might give you a ‘swelled head’, (pun intended), but our work has only just begun!

Celebrate our birthday by becoming an IAES Angel.

When you become an #IAESANGEL, International Autoimmune Encephalitis Society will send you an “I am an IAES Angel” badge and profile frame to place on your Facebook page or Website. As badges ‘take flight’ heralding IAES has been ‘touched by an angel’, others will take notice and they too may find their wings. Together, we will create a future where AE is eradicated from this world and only referenced in medical history books.

https://autoimmune-encephalitis.org/iaes-angel/

Click image. (note: To become an IAES Angel, select “I would like to designate this donation to a specific fund”, and then select: “I would like to become an IAES Angel”.

With Gratitude,

Tabitha Andrews Orth, President,

International Autoimmune Encephalitis Society

E-mail: Tabitha.Orth@autoimmune-encephalitis.org

Your generous Donations allow IAES to continue our important work and saves lives!

Attending the Neurology and Psychiatry London Conference

by Melody Wilson | Jul 24, 2019 | Special Series

July 24 | Dr. Daria Muir, IAES Medical Liaison, and (stubborn) AE survivor

The long-awaited day has arrived – Finally. It’s Monday morning, very early in the morning, and I have a flight to catch to take me to London to attend the Converging Themes in Neurology and Psychiatry conference to be held at the Royal Society of Medicine in London. I’ve been looking forward to attending and representing IAES for so months. I am excited.

The aim of this meeting is to review the current clinical and basic research understanding of the diagnosis and management of a range of disorders, including Autoimmune Encephalitis, Epilepsy and Dementia, that are at the interface between neurology and psychiatry.

The first day was going to be about Autoimmune Encephalitis (mainly focus on anti- NMDAr and anti-LGI1 antibodies), seen from the perspective of two neurologists (Prof. Sarosh Irani and Prof. Christopher Butler), a psychiatrist (Prof. Belinda Lennox) and an immunologist (Prof. David Wraith) and followed by some in-depths of the neuroscience of space and time, wonderfully focused on the memory process of evolution and dissolution (Prof. Eleanor Maguire), the navigation systems after long-term memory consolidation ( Prof. Hugo Spiers) and the development of hippocampal-dependent memory in humans (Prof. Faraneh Vargha-Khadem).

Ever since I got AE I started to feel uncomfortable in crowded and busy places. Too much noise and lots of conversations at the same time makes me lose focus. Brain-fog takes over and I am lost; (this literally happened at the end of the first day, when I took the wrong bus and ended up almost outside London in the middle of the night).

But arriving at the conference and seeing the presenters and the attendants, most of them eminent names in neurology and psychiatry in the U.K., leading doctors in the field who provide care for autoimmune encephalitis patients, gave me strength to gather all my energy to attend and get the most value I could from the experience!

I’ll share more in a follow up blog with a more detailed story, with slides and answers to questions. (The AE session was the most debated one!), but now that I have returned home, I wanted to give you the “fresh flavors”, in terms of objectives that were set and reached by the speakers and take home messages:

NMDAR-dysfunction is the hallmark of NMDAR- antibody encephalitis and hence NMDAR antibodies
There are several lines of evidence (clinical evidence, immunological/epitope data, electrophysiological modeling and PET imaging)
Down regulation (a decrease in the number of target cells in the brain caused by NMDAR) of NMDAR is key and sufficient for disease!
LGI1 AE has highly distinctive clinical phenotypes
The disease neurobiology and the underlying immunology remain poorly understood
mAbs (monoclonal antibodies) can offer novel insights in terms of tools and therapies and immunology
Autoimmune limbic encephalitis leads to acute cognitive and behavioral disruption
There are persistent deficits in anterograde and remote memory after treatment
Hippocampal atrophy is associated with network-wide structural and functional changes
These changes explain memory deficits better than hippocampal volumes
Novel disorder of pathological tearfulness in AE requires further study
Limbic encephalitis – a “neurological” neuropsychiatric disorder
There is an overlap in clinical phenotype between encephalitis and schizophrenia
5-9% of patients with psychoses have antibodies against a neuronal cell surface target
Patients with psychoses and antibodies have an abrupt onset to illness, but do not have a distinct clinical phenotype
Neurology and psychiatry need to combine forces!
The future in immunotherapy: proteins can be replaced with apitopes, representing T cell epitopes, for effective desensitization of cells causing allergy, autoimmunity and other unwanted immune responses. Apitope therapy is already proven in a range of immune pathology. Apitope immunotherapy is a targeted approach treating the underlying disease pathology by selectively reinstating immune tolerance rather than global immune suppression. (Apitope means antigen targeting epitope).

I can’t help but reinstate one of the key messages about the management of diagnosis and treatment of Autoimmune Encephalitis:

-Neurology and psychiatry need to combine forces!

A big “Thank you” and “Congratulations” to the amazing speakers and great organizers!

Your generous Donations allow IAES to continue our important work and saves lives!

Now I am a Strong Woman

by Melody Wilson | Mar 13, 2019 | AE Warrior Personal Stories

March 13, 2019 | Hannah Leasure

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Hannah Leasure’s Mother attempts to give her medication

On Christmas Eve 2013, I was admitted to hospital, where I stayed until April 2014. I had the RARE autoimmune disease called anti-NMDA receptor encephalitis. It took the doctors months to figure out what I had. I almost lost my life, BUT I lived through it. It was the hardest thing I have ever experienced. Surviving was the EASY part.

The hard part? Having to go day by day for months, just lying there pretty much dead. My pulse was 60/30. My body wouldn’t move but my brain was 100% irritated. Blood transfusions, donor blood plasma, feeding tubes, wires, spinal taps, being in the ICU, I can go on and on.

After coming back to it, I had to re-learn who my family was… including my parents. I had to re-learn how to say basic words like “hello”. I had to learn how to walk again. I couldn’t use my legs, I couldn’t use my arms. I was catatonic. It was like I was dead but there was still a pulse. I had to re-learn how to chew and swallow. I was stuck with a feeding tube for the longest.

Seeing my scar every day reminds me of how badass I am, and I will never forget that. I couldn’t do anything for myself. While having to get through this, I was getting through it with my heart shattered because the one who I wanted there the most was never there. I cried every day. “I just want to go home!” “Why can’t I be normal?”

Not only am I a survivor but I am a fighter. I fought every day to be who I was before all of this… that normal 17-year-old senior high school girl, like the rest of my friends.

So, every day, I got up out of that hospital bed, wiped my tears away and said to myself “girl you got this”. I finished all of my therapy because I knew fighting was the only way to get this done.

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After going through all of this, I got out out of hospital to realize that a huge rumor spread all around town saying that I got my disease from smoking K2 spice. Obviously THIS. IS. A. LIE. My medical records state that, and I still have them.

So, with all of this being said, I went through a lot from having to dealing with this, losing friends, having to start my life over but I would not trade any of it for the world because this made me who I am today. I was a teenage girl who went through an awful depression, who was paralyzed. Now I am a strong woman. I am walking, I can run, I can bend, I can eat, I have a great job, I have a wonderful boyfriend, I have my family and great friends.

We all have trials in life, it’s up to us how we control it.

I can do all things in Christ who strengthens me. Praise God. “Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.”

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Hannah’s book, Glowing After the Darkness, was published in 2016 and is available on Amazon.

Support our mission by becoming a card carrying member of International Autoimmune Encephalitis Society. For as little as $35 a year, you can become a ‘Sustaining’ member. Your membership includes a small gift of an awareness wrist band as a special thank you from IAES along with your beautifully designed membership card.

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Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

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A Tribute to Fathers ~ Our Unsung Heros

by Melody Wilson | Jun 24, 2018 | Holiday Stories

June 24, 2018 | Michelle Wilson

Mothers may be the most vocal front line when it comes for advocating with a child who has a chronic illness like autoimmune encephalitis (AE), but Fathers are often the rock. Our daughter Whitney has had AE for at least the last 10 years but was only diagnosed about a year and a half ago. Since Whitney has received treatment for her AE, her cognitive skills have greatly improved, and she even has a part-time job now, something we couldn’t have dreamed of just 2 years ago.

During the worst of Whitney’s AE, which involved psychosis so severe she tried to take her life several times because of command hallucinations, my husband was the rock. We took turns sleeping so someone was always up with Whitney. We had to do this for nearly 2 years until the psychiatrist tried clozapine, which finally worked. All the other anti psychotics either made Whitney worse or didn’t work at all. No one could figure out why because back then, hardly anyone was aware of the link between AE and psychosis. Whitney even had apparent homicidal thoughts. My husband urged me to lock our bedroom door when it was my time to sleep as he found Whitney staring at me while I slept more than once.

My husband stood by during Whitney’s screaming fits, which sometimes went on for hours. Sometimes Whitney would start screaming at the top of her lungs while we were driving, threatening to jump out of the car because the voices kept saying we would crash. Awful doesn’t begin to describe it. And still my husband stood by, helping where he could, never wavering.

Fathers are truly the unsung heroes in families that have children with AE. For that, I say Bravo!

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It’s OK, Daddy’s Here

by Melody Wilson | Jun 7, 2018 | Holiday Stories

June 7, 2018 | Trystn K. Daley RN, BSN

Recently, I completed a Population Health practicum for my graduate nursing program. As part of the course, I spent 105 clinical hours at a local hospital of which I chose to work with patients diagnosed with autoimmune encephalitis as my population of focus. The aim of the clinical was to look at the health needs of the population and using evidence-based research and collaborative effort with the health care team, design intervention that supports the overall health of the population. I focused on examining diagnostic processes when patients present with initial symptoms.

My career as a clinical RN has mostly consisted of inpatient neuroscience nursing and I chose to work with the AE population due to my special interest in improving outcomes for patients suffering from AE. As I went about the course, I quickly learned that International Autoimmune Encephalitis Society proved to be an excellent resource to myself as a health care clinician and overall a dedicated group of people who work tirelessly to improve the health and lives of patients diagnosed with AE and their families from all over the world.

My goal was to retrospectively look at what diagnostic tests were being done on patients diagnosed at the clinical site I was working with and to see how those findings lined up to the Lancet Neurology position paper titled, A Clinical Approach to Diagnosis of Autoimmune Encephalitis, written by Dr. Josep Dalmau and his colleagues. This paper guides clinicians to arrive at a diagnosis prior to the antibody status result which can take some time as it is most often sent out of facility and additionally having no antibody present does not eliminate a diagnosis of AE as not all antibodies causing AE are yet known. Evidence strongly suggests that earlier identification and initiation of treatment lead to a better prognosis for the patient thus standardizing diagnostic approach is an important intervention to support improved patient outcomes. Additionally, symptoms of AE mimic other disorders so that is another challenge to arriving at diagnosis that I identified in my research that can affect timeliness of treatment.

Early in my research, while doing an online search for existing community resources for Autoimmune Encephalitis patients, I found and reached out to International Autoimmune Encephalitis Society and was quickly contacted by an administrative team member. The admin team helped answer many of my questions about the issues patients face with being appropriately diagnosed initially as well as the long-term health difficulties that the population experiences. I found the admin team to be very knowledgeable in pointing me in the direction of evidence-based research articles and additionally they were willing to share their own personal experiences in facing an AE diagnosis. That information was most valuable to me as my sole purpose of working towards being a nurse leader is to help people by improving the quality of the care that they receive and to promote better health outcomes.

I was most impressed as I observed the International Autoimmune Encephalitis team working together behind the scenes to address individual needs each day and most days late into the night and in their commitment to providing a supportive place for those newly diagnosed to turn where there is a group of people who truly care and who also deeply understand.

It is with sincere gratitude that I thank International Autoimmune Encephalitis Society for your dedication in not only advancing care and outcomes through educating the public and health care professionals but also in directly addressing the needs for the individuals you work alongside who are facing a diagnosis of AE. As I continue to work towards my professional goal of being a nurse educator and teaching our future generations of nurses, it is my hope that more nurses and providers have the tools and knowledge needed to recognize Autoimmune Encephalitis early on so that earlier diagnosis and intervention is possible. I will carry what I learned from all of you forward with me and close to my heart as a reminder of what we are fighting for.

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MAY IS MENTAL HEALTH MONTH

by Melody Wilson | May 30, 2018 | Holiday Stories

May 30, 2018 | Barbara Vujaklija, RN

Although Autoimmune Encephalitis (AE) is a neurological disorder, we all know that there is a large mental health aspect to the illness. From mild psychosis to patients who end up in the Psychiatric system instead of the medical system. We all have our stories to tell, some suffer from mental health issues more than others depending on the type of autoimmune encephalitis one has and the level of severity. With adults, psychosis is a prominent symptom at the beginning of the disease and with children seizures play a dominant role in symptom onset. Recent research has uncovered that genetics plays a role in LGI1 limbic encephalitis. The type of antibody you have has distinct symptoms and syndromes that occur.

All I know for sure is that most of us as caregivers or warriors have dealt with some form of mental health issue. According to the National Institute for Mental Health (NIMH) Fact sheet on First Episode Psychosis (FEP), the word Psychosis is used to describe conditions that affect the mind, where there has been some loss of contact with reality. Psychosis can be a symptom of a mental illness or a physical condition. There lies a major problem for us neurologically challenged warriors as so many uneducated doctors make the mistake of assuming the former and not considering the later. Psychosis can include visual, auditory and tactile hallucinations. Also smell and taste can be involved. I often felt like I had a mask or web on my face, when I wasn’t hearing voices or seeing the color peach in blobs everywhere I looked. FEP can also include paranoia and delusions. Delusions are when you believe in something that is not real even when presented with the facts. Disordered thoughts and speech can also be included in the term psychosis. My tip for surviving FEP is to make sure that your loved ones and those around you understand that you are not dangerous and how they are expected to respond.

Tips for loved ones based on my nursing training and personal experience.

• Don’t overreact. The victim of Psychosis can pick up on your emotions, if you panic so will they. Don’t take anything said in this state personally.

• Listen non-judgmentally, the feelings are real. Ask “What can I do to help” or “Can you tell me more”. DO NOT dispute your loved ones ‘reality’. This is all ‘real’ to them. You can say that you do not hear or see what the person is experiencing.

• Speak slowly and simply, ask one question at a time. DO NOT treat them as if they are not in the room if speaking to someone else. The person in psychosis can hear you through their delusion and this behavior may lead to paranoia.

• Don’t threaten, especially if dealing with a child, although adults should not be treated this way either. The behavior is not intentional or bad. Stay at eye level don’t hover over the person in psychosis as this may present you as a threat.

• Stay positive and reinforce that they are receiving help. Keep yourself positive and comforting. Above all believe your loved one. What they are experiencing is real to them and no amount of denial on your part will change that and only serve to alienate you to them.

The other major mental health issue for AE warriors is depression. Depression occurs as a part of AE. The autoimmune attack on the brain causes the chemical imbalance that results in AE. You are not just depressed because you have a rare chronic disorder. Why is this distinction important? Because the cure for the depression is curing or controlling the AE. Antidepressant medications can help short term while the autoimmune system is being controlled but should not be necessary long term. Although some people do experience primary depression after the AE is controlled because they have a chronic illness. Be aware that some of the medication taken for secondary effects of AE can cause the chemical imbalance. However, it is an important distinction in the acute phase of the disorder. that are prescribed for psychosis should be avoided with autoimmune encephalitis, especially in the cases on anti-NMDAr encephalitis.

The NIMH recognizes several types of depression but the most common type that presents with AE is Psychotic Depression, mixing some form of psychosis with depressed mood. Most often the delusions take the form of depressive subjects. Such as poverty, illness or guilt especially over illness. We have had a few members with autoimmune encephalitis who have committed suicide, so if you feel like harming yourself talk to someone immediately. If you are a care giver, watch your warrior closely for signs that depression may include thoughts of self-harm. The usual treatment for AE induced FEP and depression is IV steroids which are then tapered after a steroid sparing agent has been brought to full dose and effectively supporting the patient by suppressing the immune system. Short term anti-depressants and anti-psychotics may be used to alleviate symptoms until immunosuppression has been achieved.

However, the NIMH does offer some tips that may help with depression during treatment.

• Try to be active and exercise as this increases blood flow to the brain.

• Set realistic goals for yourself.

• Try to spend time with other people and confide in a trusted friend or relative.

• Try not to isolate yourself and let others help you.

• Expect your mood to improve gradually not immediately. Report feelings of self-harm to someone immediately.

• Postpone important decisions, such as getting married or divorced, or changing jobs until you feel better.

• Discuss decisions with others who know you well and have a more objective view of your situation.

• Continue to educate yourself about depression. (I would add also about AE.)

To sum up, while these mental health issues are an aspect of AE and not separate from the disorder and while short term medications may relieve symptoms while waiting for the immune system to become suppressed, the only real fix is to fix the AE.

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EREN’S STORY ~ A Small and Mighty anti-NMDAr Warrior

by Melody Wilson | May 24, 2018 | AE Warrior Personal Stories

May 24, 2018 | Adriane Lugo

As a Mother of 5 children, I was used to juggling schedules filled with homework, school projects and activities, nursing one of my children when they fell sick with the usual childhood cold or flu and working evenings. None of those skills prepared me for that terrifying day last October 2017 when I found my 3-year-old son, Eren, non-responsive. He was rushed to the hospital. He was admitted into ICU.

Many people do not know what autoimmune encephalitis is. I was one of them. The neurologist informed us, as our son was in ICU, that he suspected anti-NMDAr encephalitis. I became overwhelmed with fear. As the doctors noticed the fear on my face, they tried to calm me and explain further. I was in such shock, I couldn’t absorb much of what they were telling me. Eren’s results came back, he had tested positive for antibodies against the NR1 subunit of the NMDAR. The diagnosis of anti-NMDAr encephalitis was now confirmed. During Eren’s hospital stay he was given 5 days of IVIG. After he was discharged from the hospital, he received 10 days of steroids.

(Pictured: Eren receiving 4th infusion of IVIG in hospital.)

This disease turned our lives upside down. The worst part is not knowing what to expect. I watch his every move and question every fever and cold, wondering if this disease is coming back. Remembering images of Eren in ICU still plague me. The tantrums and the medications, what’s normal now? I continued to wonder.

(Video of Eren filmed between Filmed October 29th – November 4th 2017. A dramatic depiction of his anti-NMDAr AE)

It wasn’t until early January when I found International Autoimmune Encephalitis Society that I no longer felt alone. I could rely on the volunteers within the organization and fellow members of their support group to help me understand what was happening and what to do. After receiving steroids, Keppra and IVIG in November Eren was improved and the doctor did not feel that any further treatments were necessary. But I began to question this and remained super vigilant. IAES provided information about how anti-NMDAr was treated and Eren had only had two of the treatments of first line therapy in the protocol.

By April I started noticing that Eren was becoming extremely emotional and at times would burst into tears unwarranted. He then began to experience insomnia. He would tell me he was tired but was having trouble going to sleep. He wanted to go to sleep but sleep would not come. I contacted IAES and reported these symptoms in their educational support group. Receiving confirmation that these were symptoms of anti-NMDAr and being asked what his treatment plan was caused me true worry. Eren didn’t have a treatment plan and from what I was learning from IAES, he should have one.

The neurologist didn’t schedule a follow-up after Eren’s treatment ended. He gave us his card and said to call if we notice any big changes in Eren. We were told that clinically he was doing better. I contacted IAES for help because the doctor felt that waiting to see how Eren did and treating only when his symptoms became severe was the best course to take. Based on what I reported to IAES, they agreed that our feelings about getting a second opinion were strongly justified. They explained that Eren was experiencing symptoms and according to research by experts in the field should be receiving additional treatment. They recommended a doctor with expertise close to our home and directed me to their doctor’s list. We were able to get an appointment relatively quickly much to my relief as I understand many experts have waiting list that are 6 months long.

As I write, I can share that we Just came back from an appointment with one of the doctors on the IAES Doctor’s list. I feel so much relief! She is going to do an evaluation on our son next week, so she can see where he is and what the next steps should be. I feel like a black cloud has been removed from above me. I finally feel like there is hope for my boy. Thank you IAES! we would be lost without you!

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The Commute that Changed the Direction of My Life

by Melody Wilson | Apr 25, 2018 | AE Warrior Personal Stories

April 25, 2018 | Anonymous AE Warrior

One day, driving down the freeway I was surprised that I couldn’t see the exit I was trying to get to. I kept driving thinking I was missing something somehow. Twenty minutes later I realized I couldn’t see correctly. I turned around and realized I had traveled 15 miles too far. I went to work and had a horrible headache. I thought – time for new glasses. I called a friend, an eye doctor, who fit me into his schedule quickly.

After examining me, my doctor friend gave me stunning news, “You have swelling in your brain. You need an MRI.” Well, I thought, that is impossible. But, I told him I would try to get one done next week. The following week I had an MRI and the results were normal. I was diagnosed with Benign Intracranial Hypertension and was prescribed medication to treat it.

Well, OK. It got better. However, my family felt I was getting worse. I had begun to display some real problems with memory and other cognitive issues. I thought my family was crazy, over reacting – everything was fine. Soon after that though, I went in to see a neurologist because of my continued headache. Five minutes into my appointment I was diagnosed with migraines. So, all good. Nothing to be concerned about.

Unfortunately, the brain swelling didn’t stop and I had to go back to the neurologist. He thought, “…Maybe steroids – but that’s a risk. My symptoms could be caused by anxiety. To understand more, I underwent a neuro-psych evaluation. The results were alarming. It showed ‘frontotemporal lobe dementia’.

I was told to ‘get my affairs in order’ as ‘I had 4-5 years to live.’ I spent three months working all day only to come home and go to bed by 6 PM. It was around this time I went to see my Primary Care physician who advised me to go to the Mayo Clinic in Rochester, MN to get a second opinion.

The first Doctor I saw at the Mayo Clinic was able to rule out Frontotemporal lobe dementia by PET scan but said he didn’t know what the cause of my problem was. I had low B12 and was given B12 injections. A month later I couldn’t speak, I was seen at Mayo by one of their experts who diagnosed me with a rare type of receptive aphasia. A repeat PET scan showed damage in that area of my brain and an EEG showed slowing. Other tests were borderline.

I was admitted to the hospital and started on steroids 1 gram x 5 days. Then 1 gram 3 x /week. My family thought I was better. I thought nothing was wrong. Of course, they couldn’t understand anything I was saying. I kept up with steroids. The next type of treatment I had after steroids was IVIG. However, I had a severe reaction to IVIG with fever, rash and hemolysis. So, plasmapheresis was started.

One day I was at a mall and felt dizzy and almost passed out. I went to the doctor and it was discovered that I had 3 pulmonary emboli. Further testing confirmed that I had antiphospholipid syndrome. I started Cytoxan for 6 months. I really thought going through all this treatment was stupid because as far as I was concerned, I was in perfect health. After the Cyclophosphamide (Cytoxan) treatments, I was started on rituximab. I have been on a combination of steroids and rituximab ever since, approximately for 5 years now.

AN UNEXPECTED TWIST~

In 2015, my daughter suddenly developed psychosis (over a 20-minute period). Although we had been told it would be a 1:1,000,000 chance that she had autoimmune encephalitis, she was sent to Mayo for evaluations. Mayo diagnosed her with anti-NMDA-like syndrome, (it was a month after symptoms and no antibody had been found). She was treated with steroids, plasmapheresis and finally rituximab and is now a graduate student.

This disease is a horrible thing. I am frequently asked, “How do you accept that this happened to you?” I can now answer that question. It is the fact that my daughter survived autoimmune encephalitis. She was nearly in a coma when she arrived at Mayo where she was admitted, diagnosed and treated. Given that my health history played a role in saving her life, that is far and away enough for me to be happy about. Being an autoimmune encephalitis patient is not the end of the world. It is the world you make for yourself after it happens to you that is the most important.

I am five years into my autoimmune encephalitis journey now and I still get rituximab and steroids. I am grateful that I have made it this far. I am grateful for the IAES. So, should all of you be.

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Young Texas Woman with anti-NMDAr Encephalitis fights for her Life and the Life of her unborn child

by Melody Wilson | Feb 20, 2018 | AE Warrior Personal Stories

February 20, 2018 | Kristy Caldwell (Haley’s Mom)

This is the story of 19 year old Haley Bounds

Haley has always been a healthy child; never having anything but the common cold. Out of the “blue” the first part of December 2017 mild seizures began. Haley was also having headaches, confusion, memory deficits, labile mood, sleep disturbance, paranoid thoughts, and hallucinations. Doctors told us at first that this was due to dehydration and/or she had epilepsy.

On December 27, 2017 Haley had her first Grand Mal Seizure and was admitted into our local hospital. Haley started to lose speech, movement, etc. and seizures continued. The Doctors continued to lean towards epilepsy, but despite seizure medications, Haley got worse. She lost all speech, movement, and slipped into a comatose state. A second MRI was performed and had changed from the first MRI; showing infection and swelling. Haley was put on a ventilator and was transferred to a Dallas Texas hospital. After many tests, scans, etc. Haley was diagnosed with anti-NMDA receptor Encephalitis. The lumbar puncture was positive for NMDAr in spinal fluid.

Haley has had all first line treatments: IV steroids, plasma exchange (seven treatments) and IVIG. Her doctor’s advanced her to second line treatments of rituximab, and recently cyclophosphamide, a chemotherapy drug. Seizures have continued with an average of two seizures a day. Haley is not doing better. Haley had a tracheotomy performed. We are on Day 55 of her hospital stay where she is cared for in a seizure monitoring room. We have a meeting with her team of Doctors this week to discuss next steps in her treatment plan. Haley is 17 weeks pregnant, so her case is even more complicated.

We continue to pray and have faith. Your prayer are greatly appreciated. You can follow Haley’s story on Facebook under, “Prayers for Haley”

https://m.facebook.com/Prayers-for-Haley-324873681348375/

Thank you and blessings.

Kristy Caldwell- Haley’s Mom

anti-NMDAr autoimmune encephalitis was identified in 2007 by Dr. Josef Dalmau at UPENN. It is the most common type of autoimmune encephalitis and occurs more frequently than infectious encephalitis. AE is treatable.

The initial presentation of NMDAr encephalitis appears to evolve from a frequent, but not invariable, prodromal stage, to a clinical presentation with behavioral and personality changes and psychiatric features, including psychosis, cognitive dysfunction, and seizures, often occurring within the first few days of symptom onset. These are followed days to weeks later by subcortical features, such as movement disorder/dyskinesia, autonomic dysfunction, central hypoventilation, and reduced consciousness . Finally the patients recover, often showing previous features in reverse order.

Recovery is often protracted with long hospital admissions. One remarkable feature of NMDAR Antibody encephalitis is the prolonged recovery, with progressive improvements in cognitive domains noted for months and even years following the end of treatment. Early treatment is associated with best outcomes.

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International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

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The Dangers of Psychiatric Involuntary Commitment with Autoimmune Encephalitis Onset

by Melody Wilson | Jan 30, 2018 | Hot Topics

January 30, 2018 | Gene Desotell, BA Administration of Justice and Sociology

The disease Autoimmune Encephalitis causes many neurological and psychiatric symptoms. To name a few: psychosis, depression, anxiety, balance problems, insomnia, visual hallucinations, aggression, agitation, delusions, memory loss, behavior changes (frequently bizarre), disorientation, confusion, problems talking, seizures, involuntary movements, distorted vision, weakness or numbness of part of the body, many of these symptoms are present for months and intermittently fluctuate.

Since many of these symptoms are also present with bipolar disorder or schizophrenia, and Autoimmune Encephalitis is a newly identified neurological set of disorders, many first-time medical responders such as emergency room personnel, psychiatrists and neurologists have never heard of these disorders or seen a case. Given that psychiatric symptoms are usually the first and most prominent to present themselves in autoimmune encephalitis prior to more obvious neurological symptoms that are not seen in psychiatric disorders, patients with first time psychosis or other psychiatric symptoms are frequently misdiagnosed as a psychiatric case. The patient is then detoured away from neurological evaluations and suspicions of central nervous system involvement and incorrectly admitted as a psychiatric patient.

This pitfall, due to lack of medical and public awareness of these disorders, puts the autoimmune encephalitis patient in danger of delayed diagnosis or worse: never being correctly diagnosed. Autoimmune encephalitis is a highly treatable and reversible disease. Timely diagnosis brings best outcomes and delays can result in permanent brain damage or a life threatening medical crisis with tragic consequences.

Involuntary commitment or civil commitment

Emergency involuntary institutionalization, (also known informally as sectioning or being sectioned in some jurisdictions, such as the United Kingdom), is a legal process through which an individual who is deemed by a qualified agent initiated by judges, law enforcement officials, physicians, or mental health professionals to have symptoms of severe mental disorder is court-ordered into treatment in a psychiatric facility or ward as an ‘inmate patient’. Involuntary examination can occur when there is evidence that the person:

1. Possibly has a mental illness

2. Is a harm to self, harm to others, or self-neglectful

Examinations may last up to 72 hours after a person is deemed medically stable. Criteria for involuntary civil commitment are established by laws, which vary between nations. Commitment proceedings often follow a period of emergency hospitalization, during which an individual with acute psychiatric symptoms is confined for a relatively short duration (e.g. 72 hours) in a treatment facility for evaluation and stabilization by mental health professionals—who may then determine whether further civil commitment is appropriate or necessary. If civil commitment proceedings follow, then the evaluation is presented in a formal court hearing where testimony and other evidence may also be submitted. The subject of the hearing is typically entitled to legal counsel and may challenge a commitment order through habeas corpus rules.

Without medical treatment that addresses the cause of the patient’s symptoms, immune suppression for autoimmune encephalitis, the ‘inmate patient’ can not be stabilized for 72 hours and legal commitment court hearings commence. This tragic situation is further complicated by the fact that autoimmune encephalitis patients are anti-psychotic intolerant. Since many of the common medications given to treat bipolar disorder or schizophrenic patients are strong dopamine antagonists, the AE patient particularly anti-NMDAr encephalitis patients being neuroleptic intolerant, show: catatonia, rigidity, autonomic instability and altered level of consciousness after being administered these medications. This outcome is an added ‘nail in the coffin’ to the now more certain possibility that the autoimmune encephalitis patient be sentenced to legal commitment.

It is important to note that once a patient is successfully diagnosed with autoimmune encephalitis, the danger of involuntary commitment to a psychiatric facility has not passed. As my wife’s caregiver, I have learned to be prepared in the event of her suddenly relapsing. Prednisone historically successfully brings her back to base line with all psychiatric symptoms resolved within a very short period.

The need for an emergency prescription of 60 mg of prednisone became evident to me one memorable weekend. My wife’s doctor was not in one day and I called and got a resident on the phone. I explained that she was in relapse and out of prednisone. She required an urgent refill to pull her out of her state and resolve her symptoms. The resident asked me to list her apparent presenting symptoms. I said, “Hallucinations, severe depression, balance issues and stupor.”

The resident responded, “She takes prednisone for those symptoms?”

“Yes”, I reported. “Prednisone has resolved all of her symptoms during several relapses.” I realized he knew nothing about Autoimmune Encephalitis and began to feel the helplessness of being faced with a medical professional unfamiliar with her diagnosis so I said, “Look, call her doctor. He can explain to you why prednisolone works for her diagnosis. Right now, we need to get going on a refill!” He said he would contact her regular doctor and call me right back. Five minutes later he called back to tell me the prescription was called in and ready for pick up. Lesson learned: always be ready for the relapse. The alternative of going to an emergency room and having her misdirected to psych was not an option I wanted to face in the mist of her medical crisis.

As a police officer with an associate degree in Police Science and Bachelors in both Administration of Justice and Sociology, I have had a lot of experience with administering civil commitments, incarceration on the psych ward. To police officer’s it is known by the terminology ‘to Baker Act a civilian’. While working in the department my routinely assigned patrol area was in the Ghetto between Milwaukee and Chicago. The Ghetto is the prime location for a police officer to acquire the most experience in any law enforcement department. In my work, it was common place to witness people with mental illness being shunned, talked down to, mistreated by family members or by members of the community who did not understand mental illness.

I still remember the 70-year-old woman who lived in constant fear because she was convinced three men who lived in her home would launch their attack some night soon and successfully slit her throat. I clearly recall a woman who was a survivor or Nazi Germany, asking me and my partner if we thought we could made it past the Germans outside who were gunning people down as they came and went from her home. She had survived war only to be forever psychologically traumatized by mentally reliving the terrors she had witnessed. This was no way for a person to live their life when help was available. Yet, involuntary commitment was the only way I could guarantee the help they needed was delivered in order for them to live their life to the fullest once more.

I did more civil commitments then any law enforcement officer in my 200-manned department. I acquired expert knowledge in civil commitment statutes in order to ensure that citizens received the best opportunity for a safe and improved quality of life by accessing the help and support they needed. Provisions under the statute included victims of drug and alcohol addictions. Some alcoholics or drug addicts are such a danger to themselves and others that they will literally consume lethal substance amounts or have such behavior change they are a danger to society. These citizens are subject to commitment under the statute.

My wife avoided commitment because I knew what to do to reverse the relapse, in her case it was 60 mg prednisone daily for 6 days. Unfortunately, many people with AE do not know that this treatment is documented in research covering treatment protocol for chronic maintenance addressing relapse. Many doctors have never heard of Autoimmune Encephalitis so they are equally unaware. In reading autopsy studies of AE patients, many had died because no one knew to give steroids in a relapse. Suicide, due to autoimmune depression, is also a common threat to the patient in a state of uncontrolled AE. Insufficient awareness of autoimmune encephalitis continues to be responsible for legal commitments from misdiagnosis resulting in loss of life when an inexpensive treatment such as steroids can completely resolve the psychiatric presentation seen at onset or in relapse.

Placing a Patient on a Psych Hold can Lead to Long Term Legal Commitment

The usual course of action is a patient is placed on a 72-hour psych hold by a Judge based on a petition to the court made by a police officer or Doctor. Once this occurs, it is imperative that a family member or caregiver immediately hire an attorney versed in this area of law to represent the patient’s interests. The AE patient is now in the life-threatening situation of not receiving the medical treatment necessary and could find themselves legally committed jeopardizing their life and if they survive, their quality of life. It is of the utmost importance that the danger this represents is understood by the patient’s family and that no delay for proper legal counsel occurs. If financial circumstances restrict you, going into credit card debit or selling what you can to acquire the legal funds should be considered to save your loved one’s life.

Once the Judge has approved the petition for a 72-hour psych hold, a court date is set for a hearing. An involuntary legal commitment can only be made by a Judge’s court order. Only a Judge can reverse the Judge’s order. The police or Doctor, who originally petitioned the court, can only petition the court to reverse the Judge’s order. The Judge who placed you on the psych hold is the only person who can give permission to arrange for you to be transferred to a medical hospital for a neurological work up. Therefore, if you do have a diagnosis and have been treated by an expert Neuro-immunologist in the past, they are not able to release you from a psych hold or prevent a court date from occurring as they did not place you on that hold and are not working at the facility where you are being held and are not overseeing your care. You are at the mercy of an attorney, their due diligence and research into your circumstances and the Judge in charge of hearing your case.

At this point, for the AE patient, expert testimony from a neurologist in the field of autoimmune neurology could prove to be invaluable. However, this usually doesn’t happen. The Psychiatric medical community is used to looking at these cases not as a neurological condition but rather a psychiatric illness. Psychiatrists are convinced their diagnosis of bipolar disorder or schizophrenia is accurate and have a career in seeing the patient improve and stabilize with anti-psychotic dopamine antagonist medications. They are confident that their treatment will lead to their patient being stabilized. However, as previously discussed these treatments have a devastating effect on the AE patient. Once legally committed, often for a period of 6-month, that time usually needs to elapse before the case is heard again in court. It is very hard to get around or get out of a commitment. You can only be released by order of the Judge.

So, what can one do when psychiatric protocol is followed and a neurological protocol is ignored? The only option is to convince the judge that the patient is suffering from a neurological disorder and requires a full neurological evaluation to determine their diagnosis. In order to achieve this, an expert in the field of autoimmune encephalitis needs to be able to evaluate the patient to provide the medical evidence of the diagnosis. The Neuro-immunologist then needs to explain in court what medical treatments are needed. Warn against what subjecting the patient to psychiatric medications can do in worsening the patient’s condition and the ramifications of allowing the disease to progress unchecked. This needs to be accomplished to the Judge’s satisfaction while the Psychiatrist will be presenting their arguments for how they arrived at their psychiatric diagnosis and treatment plan.

As a patient advocate in the autoimmune encephalitis community, I have witnessed many preventable worse case scenarios. I have witnessed cases where family felt making the financial sacrifice of hiring an experienced attorney specializing in civil commitment law was unnecessary and felt confident a court appointed attorney would suffice. I have witnessed cases where a caregiver or family member felt they could speak in court for their loved one instead of a medical professional. I have witnessed families feeling confident that they could advocate themselves out of the possibility of legal commitment either because they felt they knew their loved one so well or their medical condition or simply loved them so much that they truly felt nothing horrific would befall them.

Unfortunately, each time I have watched a family decide against expert legal counsel from the very first of hearing their family member has been placed on a psychiatric hold, I have had to watch the horrors unfold and a legal commitment occur. I lose sleep to this day over wondering what else I might have done or said to drive home the importance of acquiring immediate expert legal counsel when my mind drifts back to some of these cases. I lie awake sometimes wondering why my words of warning fell on silent ears. Simply stated: a lay person or court appointed attorney going up against a Psychiatrist with knowledge of protocol is a losing proposition. The attorney with good knowledge of civil commitment law working with an AE expert will usually win with the proper medical evidence in hand.

Yet, there is a better way to avoid all this heartache. Prepare in advance with family members for this relapsing remitting disease by having a plan in place when relapse occurs. In my wife’s case, her doctor has ordered 60 mg prednisone tablets orally with a prescribed titration when relapse occurs. Get a good diagnosis by an expert in AE so there is no doubt based on proper medical testing. Proper planning, if the medical condition is known after AE has onset, can avoid civil commitment and a subsequent financial and emotional hardship. Additionally, the AE patient should wear a medical ID bracelet, have their supporting medical documentation in a portable binder at home complete with MRI, EEG on discs if a prior diagnosis has occurred. Included should be all telephone contacts for their treating physician so they can be called by ER personnel.

And so, like the Thorn bird, a species known for its outstanding ability to sing, I write this blog with the hope that my warning song will be heard and a life saved.

Gene Desotell is a retired police officer with an Associate Degree in Police Science and Bachelors in both Administration of Justice and Sociology

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